An Australian boy's fight against Neuroblastoma, a lethal childhood cancer

Thursday, February 7, 2013

FB takes over blog! Noooooo....

I have found that Facebook seems to be the fastest point for updates lately and
I feel bad that I should also put something up here too, so don't stress if you don't have a FB cause I will eventually get around to updates here when I can. As you know we arrived
back in Australia 5 months ago. Settling in has been a bit harder than
anticipated, I see now it will be a year or two in reality, to be budgeting
better and catching up on things. So far I tried Peter Mac Hospital for an
Oncologist there, but they referred me to Monash as they do not do pediatric
bone marrow biopsies and they feel Dylan would be better having everything done
in the one place ie: The Royal Children’s or Monash, which are both linked with
the same team of oncologists. As everyone knows, I have great hesitation of
running into 3 previous oncologists who were involved in Dylan’s case for the
first 6 months. I was assured that I could meet with Dr Moore instead and not
deal with those particular doctors. After dealing with my personal feelings
about even dealing with the team members from the Children’s, I went in with
the professional not personal attitude. I was greeted with open arms by Dr
Moore who was a fellow at the time of Dylan’s diagnosis and remembered us. She
is a young oncologist but has a very sincere nature which was very comforting.
She explained that she remembered thinking how hard it must have been for us
being in the position we were in and that mothers know best. I was very
relieved to find that Dr Moore was not like the other doctors I had dealt with
in the past. Monash is also only 5-10 minutes away from us. They have built a
cancer wing for pediatrics and it was very nice in comparison to our earlier
experiences of cancer care in Australia. Dr Moore said she will contact Dr Modak for Dylan’s
records and his recommendations. She told me she would be foolish not to
utilize the advice from Dr Modak. I then got an email from one of the nurses
who delivered a lot of Dylan’s chemo at RCH when he was first diagnosed, saying
she is now working at Monash and will be making Dylan’s work up schedule and
she can’t wait to see us! I am so relieved. A full baseline work up will be
done in the next 4-8 weeks allowing time for Dylan to settle into school, as
the work up will mean 4-5 days off school. We have started on Dylan’s dental
care here too. We see a community dentist who has already done a cleaning and
filling and will work with him over the next 12 months on filling the rest of
the fillings in almost every tooth. He is on high fluoride toothpaste and tooth
moose to try and repair the damage caused by the chemo. X-rays revealed the
usual short roots on the teeth that chemo is known for, but also he has an
impacted tooth. As his dentist works on his fillings we will wait for an
orthodontist referral at the dental hospital in the city to see if it needs to
be surgically removed or if it can be left alone. This referral can take a few
months to get, which is fine since he is in no discomfort by it. School, the
next big hurdle had me stressed out to the max. We decided on a high school
quickly, given the area and that we knew kids going to the school. After
visiting the school and seeing their wonderful music program, the deal was
sealed. I knew it was the right one just by the native trees and plants that
enclose around the school, the smell was so fresh and so Aussie :) Cain has 12 credits from New York towards his VCE so
he was able to go straight into year 12 as he only needs 16 credits to graduate
(in other words he only needs to make 4 credits this year) He of course choose
music in his curriculum, along with psychology, business management, math and
mandatory English. Cain continues to aspire to going to VCA (Victorian College of the Arts) after he completes year 12 at the end of
2013. Cain settled in fast, a week last year at school as a year 12 orientation
and he had his phone blowing up with texts and calls, and all of a sudden it
went from Cain being home all the time to, see ya mum! He already has a
girlfriend and I think he is pretty content with life right now. It’s actually
so awesome having an 18 year old…he’s a legal adult here in Australia. I thought I would freak out when he grew up, but I
love it now. Dylan has been down in the dumps, it’s hard for him to understand
the concept of time being a huge factor into our lives changing here. He thought
when he left New
York he would
instantly have this “new life” I think. He struggles with boredom, but that was
the same in New
York too. He
had an orientation day at school, year 7, and he came home in tears, it broke
my heart. He said they encouraged him do sport and he couldn’t, but they kept
saying to give it a go, then he felt embarrassed not to, so he did and then he
was in lots of pain. Between then and the 6 weeks until school officially
started I was a mess with the worry of how Dylan was going to go at school.
Well, he started last week and I am in total shock. He has done brilliant! Up
early, showered, teeth brushed and lunch made! Under my advise, sport has been
removed from his curriculum and replaced with an extra home economics class or
Japanese class. As you know cooking and the Asian culture is Dylan’s keen
interests so he is very happy with this arrangement. He goes to school with
Jenni’s nephew Max, and they are good friends which has made the transition
even better. Yesterday he told Cain to keep doing whatever it is he is doing
cause he is making him popular LOL. Cain said what do you mean and Dylan said
well everyone keeps asking if Cain with the tattoos and plays bass your
brother? And when he replies yes they smile and say, cool LOL. Dylan came home
last night with some English homework, brainstorm as part one and write your
biography as part two. Dylan huffed and puffed and gestured the sheet of paper
to me, saying that he can’t do it because it doesn’t apply to him and the
teachers don’t understand, that they got frustrated with him. I looked at the
paper. Seemed simple enough, and Dylan has a great autobiography to write
about! I tried to explain that although some questions don’t apply to him he
can improvise. I could see why he frustrated the teachers, he was frustrating
me! Then I realized that I could tell he really did want to do the homework but
he didn’t know how. But it was so simple, how could he not know how? So I
looked at the questions again, read them twice over, then it hit me! These were
some of the questions:

·Have you spent
time with your grandparents? What are your best memories of going to grandma’s
house?

·Have you had a
very best friend? What adventures have you shared?

·Did yours aunts,
uncles or cousins make time to have fun with you?

·What was the best
family vacation you went on?

·What is unique
about your family? Does your family have holiday traditions?

Poor kid. He was looking at
the questions differently to everyone else, he was looking at them as a “normal
childhood” and he didn’t have that. So he just made up his mind that he
couldn’t do the homework. Best friend died in 2009 at age 13, can’t remember
much of my cousins or grandparents, etc, etc. So I then had to explain it to
him differently. Dylan you have the most interesting story to tell! We may have
never been on an official family vacation but we have been to America and traveled a bit around there at various times. You
may not have seen your cousins but you have 22 of them and you are
re-connecting now. Don’t you remember when Nana visited us in New York, and how she had a photo taken with Elmo. And we are
a very unique family, not because you have cancer but because of what we did,
we raised money and went on the news and in the paper, you met several celebrities
and even went to the movies with Nicole Kidman! I explained his biography is
here, right here on this blog, over 500 postings…writing an autobiography is
easy. After an hour in his room he proudly came out and said he was done. The
only other things he has said about school is that he feels he is too old for
the kids (he is 14) and the kids he is with are 12. In the same breath he
confessed he felt embarrassed because he found it hard to write as fast and
keep up with the work. I explained how hard it would have been in year 9 and
unfortunately year 7 is best for his academic needs right now. I also reminded
him that education is not mine or dads priority for him right now, that his
happiness and social needs are the priority. I don’t care if you come home with
all F’s as long as you have a smile on your face Dylan. His teacher called and
we had a chat, she said she will try and add him to a year 8 or 9 class during
sport to do Japanese or Cooking. I told her not to push him too much, to
remember he is hard of hearing and this is a huge change for him. I think it’s
going to be ok.Next on the list is trying to get on top of all the bills!
School has cost so much money, school fees, uniforms, books, more books and now
photo and formal and camp money! Geeez! Then there is a huge electricity bill
and my car breaks down all the time. It’s a normal life basically I guess. The
usual stuff, it’s nice to be this normal. 8.5 years Dylan has had cancer for.
July 26th will make it 9 years…who would have thought after he was
given 2-12 months to live in 2005. If you visit my Facebook you can see photos
of Dylan and life back home in Australia, click HERE